#Chronic fatigue syndrome

[myalgicencephalomyelitiscfstom]

[crippledpunks]

i wanna say fuck you to anyone who shame disabled, chronically ill & neurodivergent people, especially homebound folks, for "spending too much time on their phone/on the internet/etc." when it's the only (Somewhat) accessible way for them to experience the world. many people don't get to get out much even if they want to because of their disabilities. shaming someone for trying to connect with the world, make friends and engage with hobbies in ways that are accessible to them is beyond cruel and unnecessary

[i-the-spoonie]

[mindblowingscience]

In 2016, years before long COVID was a thing, the US National Institutes of Health, the largest single public funder of medical research in the world, launched a study into a long-neglected and puzzling condition: chronic fatigue syndrome (CFS), also known as myalgic encephalomyelitis, or ME/CFS. Eight years later, the results of that study are finally out. In one of the most thorough investigations to date, researchers took a deep dive into a small group of 17 people who developed ME/CFS after an infection and found distinct biological differences compared to 21 healthy controls. "Overall, what we show is that ME/CFS is unambiguously biological, with multiple organ systems affected," neurologist Avindra Nath, lead researcher of the study and clinical director of NIH's National Institute of Neurological Disorders and Stroke (NINDS), said in an interview with JAMA. For decades, many doctors had dismissed ME/CFS as a psychosomatic condition that was 'all in patients' heads'. Now there is little doubt: a host of biological changes underpin ME/CFS.

Continue Reading.

[anxious-and-in-pain]

it’s okay to do things that make your symptoms worse (as long as you’ll stay safe)

every once in a while you need to eat something yummy. or go on a walk. or a trip to the zoo. take a hot shower. cry your eyes out. dance. listen to music. draw for way to long. write. laugh. sit in a cafe with a friend. paint your nails. dye your hair. go on a run. pet a cat

sometimes you need to do things that are cathartic or make yourself feel alive. sometimes you need the reminder of why you’re fighting so hard to stay alive

this is your reminder that just because it makes your symptoms worse, it isn’t always the wrong thing to do. there can be value in these actions

[violet-phoenix-nebula]

When someone has a chronic illness or is disabled and can't work, they say a few common things.

It must be nice to sit around all day/sleep all day.

I wish I could sit around all day and not work.

I wish I could sleep all the time.

They don't want to sleep as much as we have to. They'd feel sick and sluggish.

They don't want to sit around the house all day not doing anything. They'd be bored out of their fucking skull.

It's so unbelievably fucking frustrating, but there's a fundamental lack of understanding.

They liken our lives to a vacation, imagining that it's fun and relaxing and we can do whatever fun things we want to all the time.

In reality, it should be likened to an extended hospital stay. You can't do anything and you feel like shit.

[johnlennonirl]

Yesterday the 12th of May was Fibromyalgia awareness day. I'm a little late uploading it, but spreading awareness is being done nonetheless. Lots of love for my chronic pain people!! <3

[stellaltumi]

my chronically ill best friend just said "I feel like the side effects part of a medication commercial" SO FUCKING TRUE BABE

[ghostonly]

Irritates the hell out of me when people respond to a post or comment like, "everyone does this, it's not just [disorder/illness/neurotype], it's called being a person."

Yeah and everyone coughs once in a while but it doesn't mean someone with pneumonia doesn't cough?? It doesn't mean pneumonia doesn't cause coughing??

Everyone gets dizzy once in a while but it doesn't mean vertigo doesn't exist??

Just about every symptom or group-common trait is going to be experienced by people who don't belong to those groups or have that disorder. It's about the frequency and intensity with which that symptom or trait comes up.

[justabunny]

disabled people don't owe you their medical history :)

[myalgicencephalomyelitiscfstom]

[crippledpunks]

chronic fatigue weaves its way into everything. people love to tell disabled people they'd love to rest as much as we do, but they fail to understand how tired we are while we rest. we are not relaxed, we are generally pretty miserable, either from pain, irritability, or fatigue- which bleeds into every aspect of your life. being too fatigued to get up off of the couch means that you're too fatigued to get to the cupboard to pull out pans to attempt to start cooking.

the steps hidden within steps that are required to do a lot of tasks related to being a "functioning adult" are daunting, there are often way too many steps necessary to make "Simple" foods or do "simple" chores for disabled people to accomplish these tasks. chronic fatigue often means that even waking up from a nap or night's rest requires time to adjust to and power through

waking up is a process for me. im often no more alert and awake hours after i've woken than I am right after doing so. caffeine does not help fatigue- at least not at safe doses, for me, anyways. many days the act of moving from my bedroom to my living room is too much. taking dishes to the sink can be too exhausting. i have began falling asleep in front of the kitchen counter while standing because i realize the amount of steps required to clean the counters, or do the dishes, or prepare a meal that all of my energy instantly bleeds away

it's okay if you feel this way too. i have been dealing with chronic fatigue my entire life and it cost me my best paying job. i lost my ability to work because of it. it's not just you being "sleepy", you are genuinely too exhausted to function. you do NOT have the energy levels other people do, and that's okay. it's okay to let yourself be tired sometimes and address that instead of trying to pretend you're not tired.

i wish you good luck. you are loved

[unveilandresist]

by January 10th 1 in 3 people will have had this wave of covid. covid causes long term damage with each infection and wears down your immunity. you do not want this. there is no cure for long covid or me/cfs and there is a significant chance (last I checked I think it was 1/5 infections) of getting long covid that increases with each infection. please protect yourself and your loved ones by wearing a mask. variants have become more transmissible so a n95 or kn95 is the minimum protection to keep yourself reasonably safe(r) from getting covid.

it is important to understand often viruses do not simply clear up and go away. like chicken pox and shingles or what we now think of as polio that is actually post polio syndrome. polio symptoms were mild and 75% of cases are asymptomatic. we do not yet see the full scope of what this virus will do over our lifetimes. as someone who had my entire life derailed by me/cfs after having mono, (almost 10 years ago! it hasn't gotten better!) we have to take pathogens more seriously if we care about ourselves and our communities.

I'm willing and open to talk with people who want to understand better what covid does to our bodies and how we can best practice community care and also harm reduction if we're stuck in unsafe situations at home or work (certain mouthwashes and nasal sprays can help).

if you're watching what's happening in Palestine and live in the US, the government doesn't care about your life either. They lied about palestine and they lied about covid too. It is not just a cold.

[normal-with-adhd-is-a-joke]

What people don't understand about "no excess physical activity/exercise" is that everything is physical activity.

I told the people at orthopedic urgent care that I can't do physical therapy because my condition doesn't allow for exercise. They gave me a list of things I could do at home. They were exercises. I was frustrated at first, but it made me realize how able bodied people can't conceptualize "no exercise" at all.

Walking down two hallways to get to my college class is exercise. Cooking and baking are exercise. Getting something from downstairs is exercise. Even typing is exercise. Each one of those things chips away at my ability to do simple things, like sit upright or speak or even just stay awake. When someone says they can't exercise for medical reasons, that means they can't, and pushing them to do physical activity because it "doesn't take that much energy" is dangerous. Everything takes energy.

[chronically-persistent]

You know I’ve been thinking, there should be no guilt in experiencing happiness as a disabled or chronically ill person. We don’t need to suffer every waking moment to justify our experiences and our truths.

Joy is a universal right. And that includes us.

[tea-from-heaven]

When people give you little lectures and warning telling you not to have a victim mentality it pisses me off.

I am disabled and chronically ill. There are some (many) things I cannot do or struggle to do. There are many things that cause me pain and yet I do them daily because that is what society expects from me. Yes I spent the last two days taking it easy (while still attending my online classes) but unless I am running at the same capacity as able bodied people it's never enough.

I am sick to death of people telling me my best isn't good enough. As if I'm not fighting tooth and nail to move forward. As if I am not already terrified for my future and trying my best to be independent.

Warning me not to have "victim mentality" is not useful, it is hurtful and reeks of ableism.

Stop.

PSA: your best is good enough. Even if your best today was just being conscious for a few hours. You are giving everything you have in a world not built for you. That is brave af. You're doing wonderful!